Last night my husband and I found out that our daughter, Mary (my stepdaughter, technically) MAY have lupus. She and her sisters all went for physical exams a few weeks ago as required by their schools, and they took blood samples. Mary's came back "abnormal" and tested "positive for the possibility of lupus." Now, I'm hearing this third hand -- the info has traveled from the doctor to Mary's bio-mom to my husband to me. Mary has to wait another week to go back for testing by a rheumatoid specialist (we have to wait for the insurance to authorize it! :x )

So naturally we're scared. Lupus has never affected anyone we know or anyone in our families. Like I said, I only found out about this yesterday, but I've already read tons of stuff on the Internet, and consulted my mom who's an RN. The weird part is that Mary's only symptoms are hair loss and severe fatigue. She doesn't have any rashes or joint pain, or fever as far as we know. She gets severe headaches, possibly migraines, but I haven't seen that listed anywhere as a lupus symptom. The only medication she's been on recently was for acne, and she takes Ibuprofen for menstrual cramps.

Mary is 17, half Caucasian and half Puerto Rican, and there's no family history of lupus.

I want to know what they might have found in her blood that suggests lupus, especially considering the apparent lack of other symptoms. The doctor's on vacation as of this morning, so we're not going to know anything for a week or more. The waiting is killing us! If anyone has any words of experience that might help, please let me know.

Thanks!
Esmeralda

Marinera

07-25-2004, 07:46 AM

Hi Esmeralda!

My nick is Marinera, my name Maggy, I have lupus and been diagnosed for more than 20 yrs now, ( I'm 46 :) _ I read your message about your daughter getting a positive diagnose of lupus. Tell you what, in my family one of my sisters and me had been diagnosed with lupus but I was the only one that had the complications, so that means that not always a positive lupus diagnose will complicate your life. During the flare ups all you can do is help her with support and encourage her to follow her treatment, but then you will see there will be time where she will be free of everything , feeling great, that was the time when my dad encourage me to live more , and fight for what I wanted, I went to College, got married had a wonderful son, traveled a lot and remarried. ( A lot isn't it? :wink: ) ( I forgot to tell you my lupus complications started when I was 3 yrs old).

So you just try to learn about lupus , there is a lot of info in the net, feel free to ask, and just give her the support she will need when not feeling so good. There are a lot of treatments that can help depending on what type of complications the patient develops. So life will go on , just tell her that life won't stop because of the wolf. Teach her to keep fighting to reach her dreams in life.

Hope to read you soon,

"Cariņos" from this corner of the planet,

Marinera

Esmeralda

07-26-2004, 11:19 AM

Thank you so much for your response. Mary's doctor sent hom some printed information, which scared me all over again because he provided info only on the SLE version (sorry if my terminology isn't totally accurate!), which from what I understand can be the most damaging.

Like I said, the waiting is the worst part. She can't be tested for a few more days, and by the time the results are available, we'll be 3000 miles away at a family reunion that's been in the works for 2 years! Not to bog anyone down with useless details, but because we have a 50/50 custody situation, so Mary will be with us for a week in New York, then she and her sisters will go to New Jersey with their bio-mom for another 2 weeks -- which means we most likely won't know anything about her lupus possibility for 3 more weeks!

We had considered cancelling the trip, but we figured another few weeks won't hurt her, and she's been looking forward to this trip for so long. We didn't want to ruin it for her, so we'll just have to wait it out.

Hopefully, I won't need to come back to this board because I'd love to find out that there'd been a mistake and she's fine, but if that's not the case, I'll probably come back. Maybe even get her involved if she wants.

Thanks again,
Esmeralda :D

Saysusie

07-27-2004, 08:45 AM

Hi Esmerelda;
Yes, the waiting can be tortuous. Unfortunately, the entire testing process for a definative Lupus diagnosis is quite lengthy. I am glad that you decided not to postopone the trip. One thing that affects us (Lupus sufferers) the most (besides our symptoms) is not being able to live normal lives and having to give up those things that we love to do. Do not make too many changes in her life right now. Let her continue to live as normallly as she can with whatever symptoms she may be suffering. At the reunion, make sure that she wears a good sunscreen and keep her covered in nice light-weight clothing - but try not to coddle her or to limit her activities too much, let her have fun playing and interacting with her relatives. Keep her hydrated and give her lots of fresh fruits.
Perhaps you can suggest this board to her biological mother so that she can prepare for the time that your step-daughter will be with her. May I suggest a magazine "Lupus Now"...there is an excellent article in this months issue dealing with Lupus in children.
I wish you the best of luck..stay in touch (even if she does not have Lupus) :-)
Peace and Blessings
Saysusie

kkgadro

07-29-2004, 08:59 AM

Hi!
My name is Kathleen. I found out I had lupus when I was 24yrs. I knew something was wrong for a long time before.At 40 yrs, I am sick now and it has been hard. All the prior years I had migrains and joint pain and was a little tired but all was good. I think lupus is something you need to keep an eye on but don't let it stop your life. My Mother has lupus but she has not become sick. I have been told to stay away from red meat, white potatoes, caffeine, and alot of sugar. I makes a difference for me. Just because they say she has lupus doesn't mean she will become very ill. I know you are scared but founding out early in the game will enable her to controll it and stay healthy. I might be sick at the moment but it will ago away again and I can get back to the grind. Stay positive.
Kathleen
South Carolina